Respecting Choices in the news

[KatieSnow]

On Good Morning, America: http://abcnews.go.com/GMA/story?id=8250195&page=1

In the Washington Post (http://www.washingtonpost.com/wp-dyn/content/article/2009/09/03/AR2009090303833_pf.html)

The Unwitting Birthplace of the 'Death Panel' Myth
By Alec MacGillis
Washington Post Staff Writer
Friday, September 4, 2009


LA CROSSE, Wis. -- This city often shows up on "best places to live" lists, but residents say it is also a good place to die -- which is how it landed in the center of a controversy that almost derailed health-care reform this summer.

The town's biggest hospital, Gundersen Lutheran, has long been a pioneer in ensuring that the care provided to patients in their final months complies with their wishes. More recently, it has taken the lead in seeking to have Medicare compensate physicians for advising patients on end-of-life planning.

The hospital got its wish this spring when House Democrats inserted that provision into their health-care reform bill -- only to see former Alaska governor Sarah Palin seize on it as she warned about "death panels" that would deny care to the elderly and the disabled. Despite widespread debunking, those warnings have led lawmakers to say they will drop the provision.

"It's really distressing," hospital official Bud Hammes said. "These things need to be addressed."

President Obama's health-care initiative was nearly consumed by the furor over that provision, and Republicans continue to argue that the legislation would ration care for the elderly. The debate has underscored how fraught the discussion is on end-of-life care in a country where an optimistic ethos places great faith in technology and often precludes frank contemplations of mortality. That tendency has a price tag: A quarter of Medicare costs -- totaling $100 billion a year -- are incurred in the final year of patients' lives, and 40 percent of that in the last month.

But the controversy has had most resonance where it arguably took root, in this town of 52,000 where nearly everyone of a certain age has an advance-care directive.

La Crosse became a pioneer in addressing end-of-life questions in the mid-1980s, after Hammes, a native of the city who has a doctorate in philosophy from Notre Dame, arrived at Gundersen as the director of medical humanities, charged with educating resident physicians about ethics. He noticed a "troubling pattern," he said, in which family members struggled to make medical decisions, such as whether to continue dialysis after a stroke.

"We'd turn to the family and say, 'We need your input. If your mother or father could speak now, what would they tell you?' And the family would say, 'If we only knew,' " said Hammes, 59. "I could see the distress. They were going to have to live with themselves, with the worry about making a mistake. This was unacceptable."

The hospital began urging families to plan while people are healthy. For those who want help writing a directive, a physician will discuss the powers and limits of medicine and explain to family members what it means if they agree to serve as the "health-care agent." They will also help people define the conditions under which they would no longer want treatment. Hammes said people often define this as "when I've reached a point where I don't know who I am or who I'm with, and don't have any hope of recovery."

The directives are power-of-attorney forms that protect physicians and family members against liability, and the hospital makes clear to its doctors that they are expected to follow them. Today, more than 90 percent of people in town have directives when they die, double the national average.

The reliance on directives has an impact on the type of care people receive: Gundersen patients spend 13.5 days on average in the hospital in their final two years of life, at an average cost of $18,000. That is in contrast with big-city hospitals such as the University of California at Los Angeles medical centers (31 days and $59,000), the University of Miami Hospital (39 days, $64,000) and New York University's Langone Medical Center (54 days, $66,000).

Those disparities are not explained just by the hospital's end-of-life philosophy. Under Medicare formulas, Gundersen and other Upper Midwest hospitals receive lower reimbursements. The high-spending hospitals argue that they are also dealing with a more diverse and costly patient base.

Gundersen and other Upper Midwest providers are also less costly in general, partly because they follow a model of integrated care where doctors work closely together to minimize waste. At Gundersen, doctors receive a salary instead of being paid for each procedure they perform.

But locals say the city uses less health care in large part because of how people view the end of life. Some of this may be rooted in the down-to-earth sensibility of their German and Scandinavian forebears. (Hammes said his late mother, who had dementia, was a "pragmatic German" who thought that paying to keep herself alive was a "waste of her money.")

Mostly, though, locals say it is because Gundersen and the town's other hospital, Franciscan Skemp, have urged planning. "People here have their feet planted in the ground," said Barbara Frank, a retired teacher. "They're no-nonsense sorts of people, without a lot of illusion. That was the fertile soil upon which it was planted. But there's no question it was helped by the two medical centers taking the lead and saying, 'This is a good thing for you to do.' "

She and her husband, Donald, a retired train engineer, signed a directive 10 years ago, when they were in their 60s. "You increasingly realize that they're not going to make an exception in your case. We all die, and we want to do so with the most dignity and most control," she said. "It seemed a no-brainer. And it spares our children from making those decisions."

Over time, the practice caught on. "People talk to people who talk to people. They say, 'Do you have one?' 'Yeah,' or 'I have to get that done,' " said Ann Kotnour, a nurse whose 89-year-old mother is receiving care at home for her advanced Parkinson's after signing a directive in 2001 saying she did not want aggressive measures taken.

Financial planner Jeff Lokken's parents had met with their children and doctors in the mid-1990s to draw up directives, a step that was helpful a few years later, when he and his siblings needed to decide whether to keep their 77-year-old father on a ventilator after heart surgery. The living will also helped when his mother's health failed when she was 82. "There needs to be a conversation. In our case we had good conversations," he said.

But Gundersen staff members say those conversations take a lot of time -- a good hour, plus follow-up talks to alter directives as medical situations evolve. And Medicare does not reimburse doctors for the time spent on such discussions.

Backed up by a few other hospitals, Gundersen set out to change the federal rules to reward end-of-life planning. A Gundersen administrator testified on Capitol Hill last fall, and, with the help of a lobbyist, reached out to lawmakers such as Sen. Herb Kohl (D-Wis.), Sen. John D. Rockefeller IV (D-W.Va.) and Rep. Ron Kind (D-Wis.).

After sporadic bipartisan attempts in recent years to add consultation payments to Medicare, Rep. Earl Blumenauer (D-Ore.) submitted legislation this spring, with several Republican co-sponsors, that included a provision to reimburse doctors for consultations. A few months later, House Democrats tucked similar language into their health-care reform bill -- a legislative triumph for the small hospital in La Crosse.

Then the uproar began, capped by Palin's "death panel" remark. Gundersen officials and town residents were aghast. "It's totally absurd," Frank said. "It's just the opposite -- it's giving you a choice of how you want to be treated."

Gundersen officials were particularly upset when Sen. Charles E. Grassley (R-Iowa), whom they had considered an ally, said that the government should not "pull the plug on Grandma" and that the provision would be dropped. They were also dismayed when the provision was criticized by former House speaker Newt Gingrich (R-Ga.), who had been open about how much he appreciated the end-of-life care his father-in-law received at Gundersen.

Rep. Paul D. Ryan (R-Wis.) admires Gunderson generally but said it erred in pushing for Medicare to cover consultations. "It's right and proper for Gundersen to innovate in these directions, but it's a wholly different thing for the federal government" to endorse end-of-life planning, he said.

Gundersen officials are still fighting to keep consultation payments in the bill, with support from Sen. Mark Warner (D-Va.), who has become a leading advocate for such planning. But this week, word came that the White House is willing to drop the provision. The hospital officials are even less hopeful about more ambitious terms they sought to add -- changing Medicare payments for end-of-life care so that they are based not on the procedures a patient receives in the final months but on whether care complied with the person's wishes.

No matter what, they will keep trying to get payment for consultations into future legislation. "The [directive] itself doesn't really matter very much -- it's the clearly expressed belief and shared understanding that it represents," Hammes said. "The family members have to believe that what they do is not only legally right, but personally right. If Mom said, 'Don't do this or do do this,' it's much easier for them to say, 'I'm doing a loving thing,' and it's a decision you can live with."

The discussions do not promote less aggressive care, he said: "We're not trying to talk them into anything. We're trying to understand their values and goals, and tell them what medical science can and can't do." But many people do settle on less care. "In our community," he said, "people don't want to die hooked up to machines."

[KatieSnow]

The latest plan is for PBS to air the segment at 9am on Sunday morning, Nov. 11th, in order to catch a greater number of their desired viewing audience. It will be titled "Investigating the Truth Behind End of Life Treatment for Seniors."

[KatieSnow]

I just learned that the story already aired! You can view it on the PBS NOW Web site: http://www.pbs.org/now/shows/541/index.html

[KatieSnow]

A lengthy story about Gundersen Lutheran's work with advance care planning will be on All Things Considered, on NPR, Monday, Nov 16th. Bud Hammes will be a guest on the program. The plan is for it to run at the top of the second hour, which is either 4:00 or 4:30 pm. (does anyone know the times of the program?)

Bud said that some of those involved in a pilot may want to call in with a comment or questions but asks that you make the questions easy!

[KatieSnow]

Story in today's Star Tribune: http://www.startribune.com/lifestyle/health/87173072.html?elr=KArksUUUoDEy3LGDiO7aiU


New tool lets patients call the shots at end of their lives

By JOSEPHINE MARCOTTY, Star Tribune
Last update: March 10, 2010 - 7:02 AM

Doug State entered hospice care two years ago knowing exactly how he wanted to die: at home in Cambridge, Minn., with his wife, Carol, and his dog, Teddy.

He got his wish a year ago at age 83, when his failing heart finally stopped just as he was sitting down to breakfast at his kitchen table. What Carol State remembers most clearly about that moment is that she was able to hold her husband and tell him she loved him as he left her life forever.

It almost didn't happen that way. But State was one of the first people in Minnesota to obtain a new kind of medical document that told his family and doctors exactly what kind of care he wanted at the end of his life.

Now, that same directive is slowly being adopted at hospitals, nursing homes and hospices across the state as part of a quiet groundswell within the medical community to give terminally ill patients more control over how and where they die.

The document has an awkward name -- Provider Orders for Life Sustaining Treatment, or POLST -- but it seems to work. Where it is standard practice, most notably Oregon and La Crosse, Wis., far fewer people die in intensive care units hooked up to machines they didn't want.

More importantly, experts say, the document and the careful decision making that precedes
it lift a terrible emotional burden from patients' families.

"If he had been in a hospital, we would have had to make the decision to pull everything," said Carol State, 71. "He saved us from having to make it."

Breaking the silence

Such end-of-life medical planning is assuming more importance in the debate over a health care overhaul, and has even turned into a red-hot political ignition point. Proponents argue that billions of dollars are wasted in aggressive, expensive medical treatments for people in their last weeks of
life. Opponents have derided such end-of-life planning services as "death panels."

Supporters in Minnesota say it's actually about breaking the silence around death and giving patients what they want at the end of their life -- whether it's comfort care or as much intervention as possible.

"The reality is that patients are not allowed to make informed decisions about their medical care," said Dr. Donald Grossbach, director of hospice care for Allina. "They [should] have the right do that."

In recent years, Americans have tried an array of tools to direct care at the end of life -- living wills, advanced care directives and do-not-resuscitate (DNR) orders. Most of the time, experts say, they don't work. For example, polls show 90 percent of people say they want to die at home, but only 20 percent do.

"We were hopeful twenty years ago," said Mary Faith Marshall, a professor of bioethics at the University of Minnesota. "But fewer than 10 percent of people actually use an advanced directive."

Advanced directives and living wills are long, complex legal documents, experts say. Often they grow outdated or lie buried in a drawer at home, little use to frantic relatives or doctors, nurses and paramedics who have to make instantaneous decisions in an emergency.

To replace them, Minnesota's largest health care organizations have a statewide plan to do more advanced care planning and to make POLSTs the standard of care for patients in hospice or long-term care.

The documents will be placed with other medical records -- a uniform bright yellow, so relatives or paramedics can find them.

This year Allina Health System plans to use specially trained staff to talk to at least 4,000 patients about end-of-life planning, including POLSTs for 1,500 patients in hospice and long-term care.

An emergency

Doug State, for one, was clear about his wishes and had a DNR order. But a few months later, when Carol was away from home and her daughter was caring for him, he suddenly got dizzy. Her daughter got scared. "She couldn't reach me," said Carol State. "She did not know what to do."

Paramedics rushed Doug to the hospital in Cambridge. When Carol arrived, doctors and nurses were working frantically to keep him alive. She told them he was in hospice care, and her other daughter said, "This is not what he wanted."

But in a hospital or clinic, the drive to save a life often overrides everything, and State was airlifted to a Minneapolis hospital. He ended up exactly where he didn't want to be: far from home, in intensive care.

To Carol's joy, Doug survived, and a week later he became one of the first patients in Allina's pilot project. Carol and Doug State sat down with a nurse from Allina's hospice program and talked through his goals and wishes. He checked a box saying he chose not to be resuscitated. He checked one saying he wanted to go to a hospital only to help alleviate uncomfortable symptoms. He wanted no tube-feeding or fluids if he was unable to feed himself.

He and his doctor signed the document, and it became a part of his electronic medical record. A copy was posted on the couple's refrigerator door.

To experts like Grossbach, the document itself is less important than the conversations that precede it. Sure enough, when Doug died three months later, he didn't need the POLST because Carol knew not to call the ambulance. "It was what he wanted," she said.

Converting the skeptics

Some health care experts remain skeptical that POLSTs solve the underlying problem.

"We basically have an ongoing non-discussion on the topic of end-of-life planning" in this country, said Dr. Steven Miles, a bioethicist at the University of Minnesota. "Until families talk about it, it doesn't make any difference how you rearrange the bureaucracy."

Doctors don't generally talk about it either. Beth Virnig, a professor of health policy at the U, surveyed 4,074 doctors about advanced care planning with terminally ill patients. Her study, published in the journal Cancer, found that half would wait until all curative treatments had failed before discussing end-of-life care. "There is this idea in medicine that if you can't cure them your job is over," she said.

Nonetheless, over the last two decades POLSTs have made a difference in La Crosse. Dr. Bud Hammes, who has led the program there for two decades, said the key was giving the responsibility to trained nurses and facilitators, not doctors, and making it a regular part of part of health care.

Today, he said, at death 96 percent of the patients at La Crosse's Gundersen Lutheran hospital have an advanced care directive, a POLST or both. Only 30 percent die in the hospital, compared with 50 percent nationally.

Experts say it could take a long time before POLSTs become routine in Minnesota. But they already have at least one convert.

Doug State lived his last days at home with his wife and the pets he loved, and died at his kitchen table without tubes and machines, just as he planned. "I want to die just like he did," said Carol State. "Wouldn't that be what we all want?"


Josephine Marcotty • 612-673-7394

[KatieSnow]

Research article published in the British Medical Journal regarding the Respecting Choices model used in Australia.

http://www.bmj.com/cgi/content/full/340/mar23_1/c1345